National epilepsy surgery program: Realistic goals and pragmatic solutions
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0028-3886.132318
Source of Support: None, Conflict of Interest: None
There are multiple social, economic, and medical challenges in establishing successful epilepsy surgery programs in India and in other low- and middle-income countries (LAMIC). These can be overcome by reproducing pragmatic and proven epilepsy surgery models throughout the country with a larger aim of developing a national epilepsy surgery program so as to provide affordable and quality surgical care to all the deserving patients. An organized national epilepsy surgery support activity can help interested centers in India and in neighboring countries in developing epilepsy surgery programs.
Keywords: Drug-resistant epilepsy, epilepsy surgery, treatment gap
Over the past 50 years, epilepsy surgery has become a well-established treatment for selected patients with drug-resistant epilepsy (DRE). Still, the practice of epilepsy surgery remains largely confined to high-income countries. In addition to a medical treatment gap of 50-60% in the majority of the low- and middle-income countries (LAMIC), the surgical treatment for the epilepsy remains in nascent stage in these countries.  A survey conducted by the International League Against Epilepsy, International Bureau of Epilepsy, and World Health Organization in 2006 found that epilepsy surgery was available in only 13% of LAMIC compared with 66% of high-income countries.  Presently, not more than five centers undertake epilepsy surgeries regularly in India and less than 500 epilepsy surgeries are performed annually compared with 2,500 being performed in China annually.  With a prevalence rate of 5/1,000 person-years and an incidence rate of 50/100,000 person-years, it is estimated that at any given time, India has at least 5 million people with active epilepsy, to which nearly 500,000 people are added annually. , Considering that 25% of these patients have DRE and half of them are potential candidates for epilepsy surgery, it can be estimated that there are at least 500,000 candidates for epilepsy surgery in India at any given time point.  Thus, only one in 1000 eligible patients undergoes epilepsy surgery in India. This has resulted in a growing pool of patients with DRE, which account for the 80% of the health care costs for epilepsy.  This enormous surgical treatment gap is the result of various social, economic, demographic, political, and cultural barriers in establishing and maintaining successful epilepsy surgery programs in India. In this article, we outline the major obstacles encountered in establishing an epilepsy surgery program in India and how these can be overcome in a pragmatic way. We also outline the realistic models of epilepsy surgery programs at local and national levels with a broader objective of establishing a national epilepsy surgery network in LAMIC. We believe that the issues covered in this article will hopefully provide a framework that may integrate the contributions of every single epilepsy surgery center in India and help in developing new centers and in evolving a national epilepsy surgery program.
The various barriers encountered while establishing a successful epilepsy surgery program in India and few pragmatic solutions are enumerated in [Table 1] and are briefly discussed below.
Large population and unequal opportunities
Even with modest assumption that an epilepsy surgery center can serve a population of 10 million, at least 120 epilepsy surgery centers are required to serve the 1.2 billion people of India. With around 1200 neurologists in the country, India has one neurologist for 1 million people and for 5,000 people with epilepsy. , Moreover, majority of the neurologists in India practice in urban private hospitals that mainly cater to affluent patients. Majority of the patients who live in rural areas do not have resources to travel and seek advanced care at urban centers. The neurology centers in the state-run hospitals are usually overcrowded, where one neurologist typically sees 100-200 epilepsy patients in a day resulting in long waiting lists for consultations and subsequent investigations. This has resulted in a skewed health care system where some people undergo all types of unnecessary investigations, whereas majority of the patients in rural areas do not receive even basic diagnostic tests and medical therapy. Although state does provide subsidized care to the needy, major cost of the investigations and treatment is borne by patients themselves and is beyond the reach of majority of the rural poor. Moreover, the available resources at governmental level are mainly directed toward universal health care programs like reducing maternal and infant mortality and eradicating communicable diseases. Hence, public funding for establishing and maintaining an epilepsy surgery program is barely available.
Poverty, illiteracy, and stigma
Majority of the people in India live in rural areas with high levels of poverty and illiteracy with resultant misconceptions about epilepsy. Epilepsy is associated with strong social stigma, and people have strong beliefs in faith systems and alternative therapies and hence do not seek proper medical care. A longitudinal follow-up study over 1 year from a epilepsy clinic at West Bengal reported that 620 (43%) of the 1450 patients with epilepsy discontinued the treatment within 1 year after initiation mainly because of the financial overburden (90%), unemployment (29%), frustration and despair (21%), nonavailability of medicines locally (20%), and superstitions about epilepsy (17%).  Majority of the people are not aware of the surgical treatment of epilepsy and others believe it to be too expensive or risky. All these factors contribute to the high levels of medical and surgical treatment gap in India.
Knowledge gap and lack of specialists
Majority of the primary and secondary care physicians in India, who care for the vast majority of the people with epilepsy, have inadequate knowledge about the diagnosis and treatment of epilepsy. In a survey conducted among primary care doctors in Kerala, only 3% of the respondents had ever diagnosed focal epilepsy and only 18% had ever referred a patient for epilepsy surgery.  Postgraduate students in medicine have limited exposure to epilepsy in their curriculum, and postgraduates undergoing training in neurology often receive inadequate exposure to electroencephalography (EEG) and epileptology. This often results in trial of multiple antiepileptic drugs, unwarranted and inadequate polypharmacy, and delayed referral for epilepsy surgery. As establishing and running an epilepsy monitoring unit is cost and labor intensive proposition, which requires multidisciplinary cooperation, there is little inclination even among the trained personnel to initiate epilepsy surgery programs. Majority of the physicians, including neurologists and neurosurgeons, are not aware of the benefits of the epilepsy surgery, resulting in long delays before a patient comes to an epilepsy surgery program. In a series of 310 patients with mesial temporal lobe epilepsy with hippocampal sclerosis from the R. Madhavan Nayar Center for Comprehensive Epilepsy Care (RMNC), Trivandrum, the mean preoperative duration of epilepsy was 18 years before anterior temporal lobectomy. 
Majority of the problems mentioned above requires a more broad-based approach directed toward improving poverty, illiteracy, and the general health care system at large. Considering the enormity of this task, it is imperative that more pragmatic and affordable epilepsy surgery care models are developed and sustained to reduce the surgical treatment gap. Based upon our experience, we outline a proven model for epilepsy surgery program that should have three major objectives: (1) to evolve cost-effective epilepsy surgery programs using locally available technology and expertise, (2) to provide training to young neurologist in advanced epilepsy care, and (3) to create large scale awareness about surgical treatment of epilepsy among the public and primary and secondary care physicians.
Cost-effective epilepsy surgery model
Two basic components of the presurgical evaluation are the identification of potential surgical candidates from a pool of large number of patients and subsequent multidisciplinary evaluation and selection of best candidates who are destined to have a postoperative seizure-free outcome without any unacceptable neurological deficits. In an ideal setting, all the patients with apparent DRE should undergo multidisciplinary evaluation. However, this is neither feasible nor practical considering the large number of patients attending the epilepsy care centers in India. Hence, a screening of the patients in epilepsy clinics should be done to select the most suitable candidates for presurgical evaluation. Epilepsy surgery centers in LAMIC will lack the full range of state-of-the-art technologies to perform presurgical evaluation and surgery that are usually available in the developed world like single photon emission computed tomography (SPECT), positron emission tomography, magnetoencephalography, and intracranial EEG monitoring. Moreover, even if available, majority of the patients will not be able to afford the cost of these investigations. It is also a fact that, even in the most advanced centers, only minority of the patients with magnetic resonance imaging (MRI)-negative epilepsy can undergo successful epilepsy surgery, which usually involves multiple and often unrewarding evaluations. Hence, to provide cost-effective surgical care to a large number of patients, it is imperative that epilepsy surgery centers in India are able to select the ideal patients for presurgical evaluation and surgery with minimal and locally available technology without compromising the patient safety.  Knowing when not to operate because of the need for further investigations is as important as selecting which patient may benefit from surgery with the available facilities.
The main objective of the presurgical evaluation is to identify an abnormal area of cortex from which the seizures originate and to determine its relationship with eloquent brain regions. This requires multimodal investigations, and the extent of presurgical evaluation required in an individual case varies according to the degree of the complexity involved. An algorithm for the management of patients with DRE is depicted in [Figure 1]. Patients with surgically remediable syndromes who are considered for focal resections such as those with mesial temporal lobe epilepsy associated with hippocampal sclerosis (MTLE-HS) and low-grade neoplasms and those with large hemispheric lesions considered for hemispherotomy could be selected for surgery by MRI and interictal and ictal EEG findings; many of them may not even require ictal video-EEG recordings. , In contrast, patients with focal cortical dysplasias that are located close to eloquent cortical regions and those with normal/indistinct MRI findings often require multiple noninvasive and invasive investigations. Epilepsy surgery centers in India and other LAMIC should initially restrict their surgical candidates to patients with MTLE-HS and those with circumscribed potentially epileptogenic lesions in whom the epileptogenic zone can be unquestionably localized by using locally available, relatively inexpensive and noninvasive technologies and in whom excellent postoperative outcome can be guaranteed. In India, where patients and their caregivers bear the cost of medical care, epilepsy surgery centers will have to evolve a cost-effective presurgical evaluation strategy by restricting the investigations to the minimum. Judicious use of sphenoidal electrodes and careful selection of patients for ictal SPECT can be done to optimize the yield of these tests. This can obviate the need for invasive EEG monitoring in nearly 20% of patients. , Epilepsy surgery centers should adopt a stepwise approach in patient selection, and once the center is well experienced, then more complex cases can be evaluated and selected for epilepsy surgery.
The process of the presurgical evaluation requires a multidisciplinary team which should, at minimum, include one to two neurologists with experience in EEG and epileptology, a neurosurgeon, a neuroradiologist, a psychologist, a psychiatrist, an occupational therapist, and trained neurotechnologists. In the absence of full resources, apart from the epileptologists and neurosurgeon, other members can be recruited on contract basis to reduce the costs. Similarly, it is not necessary for an epilepsy surgery center to possess all the advanced technologies used in presurgical evaluation by itself. The epilepsy surgery centers can pool their technological and human resources and partner with centers nationally or internationally to develop optimum usage of the facilities to benefit their patients. Although the cost of the presurgical evaluation and subsequent epilepsy surgery in India amounts to a small fraction of the cost incurred in developed countries, many patients are still not able to afford it. This can be partly overcome by subsidizing the treatment for the less privileged and poor patients, whereas other patients can pay the full charges. This strategy will help in self-sustaining the program while extending the benefits to majority of the deserving patients.
To establish an epilepsy surgery program in any geographic region, it is important to understand the local demographic and social peculiarities. , To this effect, research into local factors can be undertaken at the beginning of the program and peripheral epilepsy centers can be setup at remote places where specialists can visit periodically. This can help in identifying the burden of epilepsy in the region and in selecting potential epilepsy surgery candidates who otherwise could not afford to travel and seek medical care. Periodic epilepsy camps can be conducted with the help of local nonprofit organizations where patients with epilepsy can be managed and potential candidates for surgery can be selected and referred for evaluation at an epilepsy surgery center. The outline of cost-effective epilepsy surgery model is depicted in [Figure 2].
Training the specialists
For wider reach to the different regions of the country, established epilepsy surgery centers should train young neurologists in surgical epileptology and help other centers in establishing surgical programs. The postdoctoral fellowship program in epilepsy at the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum has trained 24 neurologists during the last 10 years who have started or are in the process of starting epilepsy surgery programs in different parts of India.
Improving epilepsy surgery awareness
Majority of the people in the community and the primary care physicians have little knowledge about alternate management options for DRE, including epilepsy surgery. Hence, a need for increasing the general awareness and understanding of epilepsy in lay public and primary care physicians through effective public education programs cannot be overemphasized. This can be done through group sessions, public lectures, seminars, and newsletters with the help of local organizations.
To serve the population of 1.2 billion, a large number of epilepsy surgery centers will be required in India. It is neither possible nor desirable that all such centers should be equipped with high levels of technologies and expertise. As illustrated in [Figure 3], a decentralized epilepsy care model can be developed where patients with easy to control epilepsies or those with surgically remediable syndromes who require minimal investigations can be managed at peripheral centers, whereas more complex cases requiring advanced evaluation can be referred and managed at national epilepsy surgery centers equipped with advanced technologies and expertise . A high level of communication and cooperation at all levels is essential for the successful implementation of such a program.
India is a union of 29 states and seven union territories with populations ranging from 1 to 200 million and which are further subdivided into different districts. For taking the epilepsy care to grass root levels, each district hospital can have an epilepsy clinic managed by trained primary or secondary care physicians who can initially diagnose and treat epilepsy and can detect DRE early. , These epilepsy care centers should be connected to one to two state levels comprehensive care centers managed by trained neurologists, where patients with difficult to control epilepsy can be evaluated and those who can be selected with noninvasive investigations can be offered epilepsy surgery locally. This should be followed by a third tier of advanced referral centers at regional or national levels where patients who require advanced investigations are referred and managed. This system will result in proper allocation of the resources and will be able to extend high quality care to all the deserving patients.
Due to the lack of the trained professionals for initiating epilepsy surgery programs in India, there is a need for a coordinated effort where the expert epileptologists and neurosurgeons can provide the initial technical and expert support to young professionals for starting epilepsy surgery programs. Such an activity can help the trained neurologists and neurosurgeons in initiating and establishing epilepsy surgery programs that subsequently can be sustained locally. It will be most helpful for the professionals who have basic short-term training in epilepsy and have basic infrastructure for presurgical evaluation, which includes a facility for long-term video EEG monitoring and an access to good quality MRI. The help can be tailor made as per the local requirements and may take various forms like helping in establishing epilepsy monitoring units, selecting patients for epilepsy surgery, and providing expert surgical help in the initial stages. An effort is underway for such an activity in the form of national epilepsy surgery support activity.  There is also a need to establish a national epilepsy network of epilepsy professionals for the management of most difficult cases of epilepsy in India where these cases can be discussed and management plans can be formulated in close group meetings.
[Figure 1], [Figure 2], [Figure 3]